I used to think my diagnosis was an easy one. I was told so by my first Rheumatologist. She said if she had to pick a disease to have this would be it. I should have been offended then but I didn’t know any better. Now I do.
I used to be able to get through my days easily. My worst symptoms were dizziness and thirst or fatigue. And wrist pain. My wrists always hurt. They still hurt. All the time. But that’s not as bad as it could be. I can still use my hands. For the most part. It’s the rest of it that gets me. The things that happen over and over during the course of a day. A single 24 hour period.
It all starts when first waking up in the morning. That nice cuddly time when the world is warm and soft and I am still groggy. Then I forget who I am and I stretch. One of those full body stretches like you see in the movies except mine gets cut off in the first few seconds. The minute my body starts to straighten and twist. The sharp pain that shoots out of my hip stops me immediately and I contract back in on myself. At least I am still under the covers. Still warm.
That’s where I stay for the next few minutes. Or hours. There’s no telling how long I will put off moving again. I prefer to draw the covers close and tuck them all around me. When I am warm I can pretend pain does not exist. But it still does. I am not in denial. And as I wake up more and more, every joint touching the mattress starts reacting to the pressure. That’s the drawback of some of these diseases, like Fibromyalgia-the disease so many still believe does not actually exist. It makes you hurt just to be touched. So hugs are not a good thing for me on these days. They offer no comfort. But bed does. As long as I don’t leave.
But who can lay in bed all day? Well, who SHOULD lay in bed all day? So movement is a necessity. I roll onto my back and stretch slowly this time. I ‘listen’ to every joint as I do so. This lets me know what my day will be like. Thia and the weather but that’s another story. I sit up by pushing an elbow into the mattress because my muscles aren’t ready to do work yet. There are various noises that go along with this action but none really have a set spelling.
So I am halfway there now! Yay! I take a break to find my glasses and love the kitties who are rather belligerent that they have yet to be fed. Standing takes more noises sans spellings and pushing on my knees. I stay bent over. I have learned two things: I can no longer stand straight up without the risking a blackout and I need to stand in stages to avoid hurting my back since breaking it a year ago.
At this point, as I am standing, I know if my feet are an issue. But taking steps will tell me even more. Anyone who has had heel spurs or fasciitis knows that the first steps are the worst! I also check my knuckles at this point. It’s a semi-scientific check of how swollen I am. Another indicator of the type of day I will be having.
Now I have completed my morning routine. It’s not the same morning routine as most people on the planet, that one comes later for me. But it is my morning routine and it is important and it is valid. All these checks and balances I do just to get out of bed and begin my day also happen all day long if I am to have any kind of productive day. I read my body for cues like most people read the paper for news or watch the sky for impending weather. I can react to these by taking medicine, resting, warming up, or eating and drinking so I can stay as healthy as possible while doing as much as I physically can.
You see, It’s not that we may or may not have pain, it’s that we do have pain. Almost always. But we can learn how to react to it to be able to get through it. To live with it. To actually have a life, 24 hours at a time, in spite of it.
I am having a good 24 hours today. How ‘bout you?